Up and Way Down

I had such a crappy day. I don't even really know how to describe it. It started with night full of hot flashes, at least five shirt-soaking flashes. That made it very hard to wake up and take B to school. P& I did it together for a couple of reasons, I am not sure I should drive on an opiate, and we had an appointment with the herbal healer. That part of my day was great. It was nice to have to Pat there, to give her opinion and remind me of things. I have come to realization that I tend to automatically say that I am fine instead of saying the list of things that Pat remembers. I have to say her memory is much better these days.

I spent the rest of the day having hot flashes during my nap, then I ate a grapefruit with Bennett and just sat and held her hand for a while. It was lovely. Then I had to get to bed again. It feels like the only place I want to be. I am really crossing my fingers that Sharon can help me with the hot flashes. I think they are why I am so tired all the time.

I have reflexology tomorrow - and so does Pat. It's going to be good for both of us. I hope that tomorrow is better- actually what I want is for tonight to be flash-free.

Dail-A-Dude is Back

So today I had another meeting with Cooky, my hospice nurse. She is great and makes me feel like she is totally on my side and will take care of me no matter what. How nice is that? We were talking about pain meds and my meds journal and were brain storming what to do. She had a couple of good ideas, long acting this, a patch of that, etc. Then I said, let me look in my medicine cabinet and see if I have anything else - since we decided the Vicodin and Oxycodone were not cutting it. She told me and Pat that we had done a good job cobbling together pain management with just what we had in the cabinet and no coach. Anyway, I brought out good ole' Dilaudid. That's the drug that they gave me too much of when I was in Holyoke hospital and I had to call Bob to talk me down. Anyway, Cooky was happy to see that Dial-a-Dude and that is what I am on. I took the first pill and went to bed. Twenty minutes later I was ravenous, and had to get up to eat. Then I just wanted to hang out. I felt like my old self. It was wonderful. Cooky worked out a plan with Dr B and that is what I will be on for at least the next 36 hours. He wants to know it's working before committing.

So it was a pretty good day after all.

In case we didn't already know that Dr E is quite possibly the lease competent member of the medical profession, she called again today. She called to tell me the physical therapy associates she referred me to, don't actually do pain management, so she referred me to a sports medicine practice. That ought to help. And never mind that all this time she's been screwing around, I've been in pain. What the F*?

Tomorrow I am taking B to school, I have an appointment with an herbalist. I am not convinced about going, but Pat is coming and I think it will be interesting to see what she wants to know. At this moment, I would rather just continue to see Nancy, but I will go with an open mind. And I will let you know about it. Now that we seem to be on the right track in terms of controlling pain, I am sure I will have a more varied subject matter. I want it too.

Pretty Crappy

Today I think was my day to I realize just how bizarre and unlikely what is happening to my life truly is.  In the past three weeks everything has changed. I feel terrible physically and just realized that it's not temporary. This is it, this is what I chose when I didn't want any more treatment. It's pretty crappy and it makes me mad. Really furious. I have been swinging between exhausted and furious today. I spent most of the afternoon in bed because I knew I would not be able to be pleasant. I had a grumpy word for everything. I took myself out - I didn't want to grump all over Pat and Bennett.

So, needless to say I didn't get much done. I did get to talk to Ruth, Mary and my friend I have known the longest, Theresa. It was fun, even though I pooped out at the end. Bennett had fun with Aunties Julie and Liz and that is pretty much it.

I think I should log off - I am still pretty grumpy.

Ugh!

I have not had much luck today handling my pain. I messed up taking something a little off schedule and that was sort of that. Pat helped me sort it out late in the afternoon, and I have been feeling better. I can now say with confidence that I need pain meds all the time. What a bummer. It's like I went from needing nothing to be cautioned about taking too much Vicodin.

I am not going to post much, but did want to mention that I am beginning to believe that Bennett is one of the luckiest kids I have ever met (aside from the dying and all that). She has so many people who love her and think about her so much. Just this week she got she got three packages in the mail - a box with books from Jessica (that I have read to her no less than 10 times), a Hello Kitty bikini for the trip to St lucia from Aunt Joanne and Cousins Libby and Carly, and yesterday she got the photo album. It's really for B, even though yesterday I made it seem like it was for me.

Aunt Ruth came over for breakfast and a playdate. I saw her for about 3 minutes, Bennett got the rest of the time. Then Avy, Brad and Sandy. Everyone went to the park - I took a nap. Then it was playing. Bennett had a hard time sharing and that was the end of the playing. She was over tired and hungry. She has a very hard getting enough food in her when she is excited.

That's about it. I will post more tomorrow. I have to leave you now to dive into the big bowl of delicious chicken soup made by my personal chef, Pat. She is getting to be a very good cook. Lucky me!

Happy Inside

My sister Janna and my mother sent Bennett an absolutely wonderful photo album of pictures of me and my family (or origin) since birth. I just looked at it with Bennett and she knew who I was until about 12 - then it was the 80s. Eeeek. Did I really do that to my hair on purpose? What about all those earrings? And the make up? I hardly recognized myself. There is one picture of me and my sister Mary - and Bennett asked what Aunt Mary was doing. My answer - hitting me. She also looked at a picture of my sister Mary when she was about 10 and wore little round metal glasses and asked me why I was standing next to Harry Potter.  My heart is 5 times larger than it was before we got this photo album. I love my family so much. They are all so amazing and loving and I am so lucky.

Today I met with Hospice for the first time today. It was great. My assignment this week is to keep a pain journal so they can decide what the best meds will be for me. I am happy about that. I feel like they totally have my back, and that feels great.

I got to talk to poor Jessica and her poor screaming babies today. I hope they have a better night tonight. I can't wait until we see them all again.

Tomorrow it's Aunt Ruth in the morning, Avy in the afternoon. Fun all day. I already reserved a sleep in for the morning - it's going to be good.

Olivia + Polly Pocket = True Love 4ever

Olivia and Polly Pocket got married at our house today. Bennett was very excited and it was a big event - attended by many dolls and toys. Only about 15 minutes after they married, they had a little bunny critter baby. Olivia and PP were overheard saying they wanted daughters just like Bennett and Avy.

I don't have much time to post, but I will tell you all about calling Hospice today. They were wonderful and we will meet with them tomorrow.  It sounds like they will be sending a nurse to check in on me every week (once the insurance etc is worked out) and that they have an array of pain meds they can use to help me feel better. I am very relieved to get hooked in with these guys, I think it's going to make a big difference - I have been feeling a little abandoned lately - and confused.

I gave my stupid primary care one more chance. I gave her a chance to recommend a pain management specialist. So she referred me to a place that does physical therapy and other things to help people heal. What a dope. That's all I can say. Thank goodness Hospice can talk to Dr B to get things going - they (Hospice) said that it took one call to get all the info and records they need and were really impressed with how nice he was. Hmmmm.

I had an epiphany about pain meds today. I have been trying so hard to stick with what's on the bottle - one pill every four hours. I decided I am just going to take what I want, when I want. It's not going to be long until I am on a real pain regimen, and even if it does long term damage, I am not going to worry about that. I am much happier when the pain is under control.

That's about it. I had reflexology today, and Maryann gave me the deluxe treatment - she did my hands, feet and neck. It was divine. We should all be so lucky as to have something as wonderful as reflexology and/or acupuncture every week.

More tomorrow. Love to all.

Better Day, Yay!

This morning was little rough, but things got better as the day progressed and now I feel positively happy with not having that searing pain I had yesterday and this morning. I think it is related to my kidney stone - that mysterious pain that I get every once awhile that makes me really have to moan and groan out loud.

I had to call my stupid primary care physician today. I called to get a referral for a pain management specialist. I know Dr B is my doctor, but I need someone local who I can feel like is on my side and only about the pain (and not the cancer, etc). So she has her assistant call me and ask me if I was calling to see her, because she hasn't seen me in so long she really doesn't know the details of my case anymore. I told this assistant that I was sure that Dr E. was keeping up with the reports my oncologist has been sending regularly, and that if she needed to refresh herself, she could reread them.  And that I wanted an appointment with a specialist, not her. The assistant was so sure that I would want to see Dr E before seeing the specialist, and I would have if that was the price to get to the specialist, but I don't think I will have to see her. I am not sure I would be able to be gracious with her anyway.

I spent most of the morning lying on the couch, moping. I was in pain and that makes me really grumpy. I dozed, but didn't knit like a thought I might. Maybe I did knit, because looking at my project pile I see that Matilda's hat is done and Stella's is started. Knitting in an altered state, I guess.

I had a long and luxurious lunch with Ruth. We went to the bookstore afterwards, and just hung out. It was so much fun, I just didn't want the hanging out to stop. I think this is when the big pain started to subside. Anyway, then I went to pick up a very grumpy Bennett who had to have her hair washed at school because she and her friend Estelle decided to rub frosting in their hair. She thought it was hilarious and got grumpy when I did not think it was funny. Sometimes I've just to be the hard-ass.

Today was Pat's first day teaching the new semester at Hamp. Bennett and I had a very nice evening together and now I am going to do a little knitting and TV watching. I did try the Oxycodone last night. That stuff is very strong and makes me super loopy. I think I will only take it at night until I have other directions from my new pain person. Let's all pray that I get a good one, quick.

Beastly Pain

So the pain is here and I am trying everything I know to try to get it to go away. I have taken all the meds I can, done deep breathing, etc. And it's still here. It makes me realize that tomorrow I have to step it up to Oxycodone. I don't think I have a choice. The main tumor in my abdomen is getting so big that it feels like it's filling up my gut and pushing things around in ways that does not feel good.

Ahhhh, it's totally freaking me out. When I look down at my belly, I can see its profile from above. That is just not right. It might be freaking out a little bit because I found out that a friend of a friend who was diagnosed with ovarian cancer this summer, died. It it so weird to have people diagnosed and died within the time frame that I have been diagnosed and am still alive. I feel grateful and guilty at the same time.

Pat is washing the dishes - the dishwasher is on the fritz, Aunt Liz is over giving B a bath, Zeus is home after a 6 week vacation with our friend Marcia (they were on the Cape for most of it), and I am posting. My schedule is free tomorrow. I am going to spend it with Top Chef, knitting and snacks. That sounds like a slice of heaven to me.

I had this idea that maybe some of you had some questions you might like me to address. I can answer them in the blog (or privately, if you prefer). So email me, comment me or whatever to ask your question. Do no be shy and I will tell you the truth as I know it.

Post 445

Today one of the kids in Bennett's school vomited all over the teacher and into a bucket. We have had a lot of throwing up in the bucket scenarios during Bennett's play tonight. At least it wasn't diarrhea.

All is as well as can be expected. I kept ahead of the pain much better today and that was really good. I knitted half of Matilda's hat, took B to and from school, gave B a bath and even took her to Walgreens (which she thinks is a big treat). Soon I will put her to bed and curl up with Pat to watch the latest episode of Downton Abbey.

Tomorrow I have my eye appointment and accupuncture. Yay for both.

Dana Farber called today and offered me a spot in a phase one trial. They are trying the maximum dose of some drug that I've never heard of. I just felt so hopeless when I was talking to Dr Mc. I told her I didn't want to do it because I know it would make me sick and I also know what phase one trials very very very rarely, if ever, extend life span. Don't start sending your stories about the miracle that happened to your Uncle's third cousin. I said no, and she confirmed that if I said no I could not call tomorrow with my mind changed. It's not going to change anyway. I do not, repeat, do not want to be barfing and be in pain at the same time. I just want the rest of my life to be as it is supposed to (well, one could argue that it was supposed to last 40 or so more years, but we won't get into that...). So that's that. And I feel good about my desicion. A little scared, but really good.

That's about all I have to report. I am taking reservations for anyone who wants to come visit. It would be good to see you.

Post Slumber Party Blues

If Bennett had her way, we would all live in pods around her own living pod. Always available. Who would be in those pods? Lots of Aunties, Avy, some other kids from school, lots of Uncles and of course there would be a pool.

This is a long way for me to say that B had a most spectacular time at Aunt R&T's house for a slumber party. She was mellow when she came home, she was super sad to see them go, but eased back into life pretty easily. We played and hung out most of the night and it was just great to see her.

Pat and I slept about a million hours. We went to bed around 8 - I didn't get out of bed until 10, I think P got out around 9. We were slugs, but it was so nice just to wake up with no one yelling about princesses or Hello Kitty. Not that I mind, it was just a nice break, you know what I mean.

I had a nice day. I finished sorting Bennett's books - I have three piles. One for Goodwill, one for school and one for Spence (B's pal). The one for Spence in all of B's dinosaur books. She helped me do some sorting yesterday and decided they all needed to go to Spence. I thought that was pretty nice. 

I worked on a hat for Matilda, talked to Jessica, did a  little of this and that. That's pretty much it. Tomorrow is another day, thank God. And I will tell you about it. I need some strong prayers and thoughts coming my way to control the pain. It's getting worse - or I am getting used to the pain meds. It just sucks and is so distracting. I hate it. 

Pain and Slumber Parties

Yeah, it's been a painful day. I have been trying to keep ahead of it with the Vicodin, but it's hard. It doesn't quit cover the four hours that it's supposed to. Then I get grumpy and Pat just tells me to take it, and then I worry that I am doing some harm to my liver. You get the picture. It pretty much sucks, but it's what needs to be figured out and I will do that.

Bennett is at a slumber party with Aunt Ruth and Aunt Theo. She had a big day already - hanging with me in the morning (mostly watching Pat and Brad work on the new loft), sledding with Pat at Avy's house and then off to R&T's. I hope she is okay and having an easy time going to sleep and all that.

It snowed off and on most of the day. We didn't get that much snow, probably 3 inches. It looks nice and I am glad to have it. I love winter days, cozy and lovely to watch.

I took a nap while P&B were sledding. That's about it. I think the Vicodin keeps the bad thoughts away. I have been sleeping pretty well (except the hot flashes), and have not really be dwelling on death. I know it's going to happen, but it feels far away at this point. We just watched one of the Matrix movies, and their portrayal of death is so annoying. It's that last quiet breath and then eyes shut. I know from reading that it is not as pretty as all that. I suppose it could be that peaceful, and maybe I am just annoyed to be reminded of death. I don't know.

It's 7:15 pm and and I am waiting until 8 to go to sleep. I want to go right now, but somehow it seems untoward to go to bed at 7 on the one Saturday in a long time that my daughter is not here. I should be whooping it up, right?

And Another

Today was a good day. I woke up so tired that I asked Pat if I could sleep in. She let me. I was only interrupted a few times by Bennett who wanted to know which pair of pants, which pair of socks, which pair of undies, etc had more pink in it and would be worn by a princess or Hello Kitty. Luckily the questions were easy.

I finally got up, showered, went with Pat to get our car out of the shop. I don't want to talk about it. I will just say that I believe that Steve Lewis Subaru are a bunch of jackasses. Enough said. I went to Trader Joe's, went with Pat to Bennett's class to put together a 3D puzzle of the Statue of Liberty. It was a blast, though I was pretty pooped by then. We ate, I put B to bed and now I am posting.

We are supposed to get 3-6 inches of snow tonight. I hope we get it all. I need an act of nature that feels big and makes me stay home. Bennett is having a sleepover with Aunt Ruth and Aunt Theo tomorrow night. She is totally excited, and she admitted, a little bit scared. I think she will do great. She is such a great traveller that I think she will do fine.

We are going to go back to NY for Matilda and Stella's baptism. That's good, I want to see everyone again, and Pat has volunteered to come with me. Bennett would not stand for us to visit those babies without her, so she will come to. It should be fun and lovely. I can't wait to see those babies in their fancy dresses. Oh man, what do I have to wear? I hope the church doesn't mind jeans, I don't fit into anything else. And I am not going to buy myself new clothes. That just seems wasteful at this point.

That's about it. More tomorrow. Let it snow!

Thank God for Another Day

I didn't post yesterday because I just don't have anything nice to say about that day. It was rough, there was  a lot of crying and moaning and other hard things. It made me realize that I need to take a pain pill as soon as I wake up. It's just a hard thing to take in. How did I go from being a person who didn't need pain killers, to a person who needs them most of the day? I guess I hit some sort of threshold. I have a very high pain tolerance, and that first day when I took the first Vicodin, I realize the amount of pain I was in and how it was effecting my quality of life. So now I take it all the time. That's just the way it's going to be and I have to be okay with that. Nancy said that I could be grateful that my pain is so easily managed. I like that idea. It's like when I complained that I had to get glasses and someone said I was lucky my sight was correctable. That is humbling.

So after such a rotten day yesterday, I woke up at 6 or so to go to the bathroom and took my pills. I went back to bed and Bennett woke up around 7. She wanted to play with and I Spy book, we we did - until 8:30. I just thought it was too much fun to interrupt and make her go to school. That was a very nice way to start the day. Then I took her to school, went grocery shopping, came home and admired the work Pat was doing on the new basement loft. I put the groceries away and then had lunch with Ruth. It was a big treat to be able to have one-on-one time with Ruth. I went to get B and took her to the yarn shop to get yarn for hats. Bennett is insisting that I make Jessica's lovely babies a hat to match her kitty hat. I am also to make a hat with a flower for Bennett to match the hats that Stella and Matilda have. The colors we chose are pink, light pink and purple. Big surprise.

Warning this paragraph may be Too Much Information for some people. So when I saw Dr B last time I asked him if we could figure out a way to stop the bleed from my uterus. He said it was complicated, that they would have to run tests to determine whether the bleeding was from the tumor, menopause or just regular menstruation starting up again. So he gave me a bunch of appointments for ultra sound, biopsy, GYN oncologist, etc. And then I realized I didn't want to do any of it. None of it was going to take the cancer away, it was so many appointments with new doctors and lots of tests, it just didn't seem worth it for a few spots of blood every day. I feel really good about that decision. It really goes along with my not wanting to medicalize much more of my life. I do, however, have n appointment with a Chinese herbalist on the 30th. I let you know how that goes.

So, you are now pretty much caught up. I will post pictures as soon as I get some from Bob and Jim or Jessica. We, stupidly, did not bring a camera to NY. Next time, I swear.

Payment

Well, today was a bust. I took Bennett to school, unpacked and then camped out on the couch for the rest of the day. I watched TV, took a nap, snacked and generally gave in to my tiredness. And now I am going to watch Downton Abbey until 9 (we downloaded it), and get my big butt into bed.

I totally  forgot to mention in yesterday's blog that we visited Bennett's half-brothers (!) yesterday. Our friend M used the same donor we did and she has lovely twin boys who are about 2 months younger than B. We have been in contact since everyone was little, but have only met three times. It was fun and everyone got along. I am too tired to go into to much detail, suffice it to say that we will be going back and seeing them again soon.

More tomorrow.

Back from NYC

What a great trip we had! We had an easy ride there. The hotel was cute and funky and in my old neighborhood's tire selling area, but now gussied up. Jessica, Stella and Matilda were excellent hosts, and of course it was super fun to see Bob and Jim.

We spent a lot of time holding babies, petting babies, kissing babies' heads and generally being lulled into the world of baby-ness. Bennett was aces with the babies and immediately loved them. The moment she laid eyes on Stella, she put her hand in the car seat and started holding her hand. It was lovely. I can only say they are the sweetest, cutest and smartest babies I have met in a long time. I will be going back to get more of that love.

We stayed in this boutique hotel that must have been a warehouse of some sort. It was cute and the only things in the room were a giant bed (with the softest sheets I have ever felt) and TV on the wall. Oh, yeah, there was a night stand. Anyway, the first night was rough because someone on our floor was having a loud party that involved a lot of door slamming. It finally died down about 3. The next morning I asked the doorperson if another party was scheduled for that night and few other snotty things. Pat pretended we were not together. Thankfully the next night was very quiet. I think it's the quietest night sleep I've gotten in NY in a long time. Who is going to be walking down a street filled with tire sellers on a Sunday night?

Bob, Jim, Pat, Bennett and I went the the Brooklyn Museum to see a really great show called Hide and Seek. It was works of art that showed all kind of secret- and not-so-gay themes. It was very interesting. Bennett's favorite art piece was the huge pile of candies in the corner - and part of the piece was you were supposed to eat them. She loved art at that moment.

Last night I had a nice fancy dinner with Bob and Jim. Pat and Bennett spent the evening with Jessica and the girls. It was wonderful to have that time together. Hard things were said, tears were shed, then off to the Chocolate Room with everyone for chocolate goodies and fine port. It was an excellent night.

We are all home now. I am in bed with the bed heater on. I am exhausted in the best possible way. Tomorrow I take B to school, Pat is getting her lumber order and I have phone calls to make. Back to real life. Oh, what I wouldn't give to just have a tiny baby sleeping on my chest all the time. Talk about bringing everything down to the essentials...it's marvelous.

Much Better

So this morning after dropping Bennett of at school and getting Pat from the car mechanics, I went right for the couch. I just wanted to melt into the couch and stay there all day. Pat, because we agreed upon this, told me to sit up and take some pain meds. We found out last night that I have a hard time with detecting lower levels of pain and that is what makes me so tired (like staying in bed all day yesterday). So I did. And 15 minutes later we were on our way to Home Depot of check out sliding doors and order the lumber for the second loft. Then we went to Staples and had lunch together (not at Staples). After lunch, I hung out and Pat did this and that (I honestly don't remember) and then we went to pick up Bennett from school. After school we took her to shop shop shop and when we got home I gave her a bath and put her to bed. And now I can officially say that I a pooped. And I deserve it.

A much better day than yesterday. I solemnly swear to remember that pain killers are my friends and to take them when I need them.

Tomorrow we are off to NYC to meet Jessica's most fabulous little babies. I am not sure when we will see B&J, but I can't wait. The goal is to make this trip as mellow as possible. And that is what we are going to do. After St Lucia, I decided, it's time for people to come visit me. I am getting tired and I think I would like that more. Unless, of course, I decide we need to get to Egypt.

I Guess it Hit Me

What? I am not sure. I have been out of it all day. Without knowing it, I slept until 1:30 and even then I wasn't sure I wanted to get up. I did nothing all day. Literally. I had a head ache and it took me a while to identify it. I took some tylenol and that helped. But it did not help me get off me butt. As a matter of fact I am in bed right now. Bennett came home from school with an bad tummy, so we just curled up in bed with movies and I haven't left. I don't ever want to leave.

We are not going to NYC tomorrow. The weather is supposed to make the roads sloppy, so we are going to wait until Saturday, and just cut our trip by a day.

I am so tired. I can't even name it. Tired is not even the right word for it. I don't like it, it doesn't feel like me. Maybe now I am Eeyore. Maybe someone stole my tail and that's what's wrong. I hope it doesn't last. I can't think of a way to make it better, but I will keep trying. Tomorrow is another day, thank God. And I get to try again. Maybe get out of bed at a reasonable hour...

Shocking

First, I have to say one shocking thing. I do not like Dr Suess. The nonsense words get irritating after awhile and the books are just too long. There, I said it. I know it's not going to be popular.

I had an okay day today. Many good things happened. I dropped B off at school, applied for a handicap placard (which I really don't qualify for), went to reflexology and hung out with Sandy while B and BBF Avy played and took a bath and generally made mayhem. Pat and Sandy held them together though, I just sat around.

I think the bizarreness of the whole Hospice thing got to me today. At one point I was getting a phone call from the Cancer Connection with numbers for local hospice associations and making plans for my niece to come this summer. It's a little confusing. And I feel fine. The pain has diminished and, except for being tired from crying, I feel fine. It just doesn't make any sense. But I guess that is just true, I just doesn't make any sense. I'll have to get used to that.

A New Side of Dr B

So I finally figured out how to get Dr B to be really nice to me, I just have to be dying. Not that I am dying right this very minute, but I am full to the gills with cancer. I saw the PET scan, and my liver looks like it's polka dotted. Dr B is going to be my doctor, the next thing that is going to happen is I have to get a GYN oncologist to give me an exam because the tumors in my uterus have started to bleed. there are ways to make it stop, but they have to do some tests first.

The rest of the appointment went fine. Everything I asked for he said yes. Iam going get a handicap parking sticker, a letter so I can prove to the airline that I am healthy enough to travel, etc. I will see Dr B every month or so. The only thing I did not like was that he told me get in touch with hospice so they know who I am sooner rather than later. He said people do better when hospice is involved early.

Boy, heavy stuff, but true and really happening. I can't believe it either. Mostly I just want to get a good nights sleep, wake up tomorrow to a new day and maybe have a little fun. Not too much to ask.

The New Typical?

Today was a good day all in all. I got up and took Bennett to school, I had to pause there to remember if that was true. The only problem was I woke up exhausted and in pain. I am beginning to believe this is the new way things are going to be. More pain, less energy. I have some questions for Dr B. to help me get rid of some of the lingering effects of the chemo, and that might help me have some more energy. I am not sure there is anything that Dr B can do about the flashes of neuropathy that I still have in my feet. Or the complete lack of interest in ice cream. But my nose is still bleeding a lot and there are other things that I will not discuss here.

I also have to find out who my doctor will be, get a letter for the airline that says that I am okay to fly, and he is going to want to talk about the PET scan. I already talked about it with the doctor from Dana Farber, so I hope there will not be any additional surprises. Did I tell you that Ruth is coming with me.?One of the reasons Ruth is coming with me is Pat was afraid that if she went, she might punch Dr B. She is very mad at him, sure that he did something wrong. I asked the doctor at DF what the protocols were for colon cancer and she told me that Dr B did everything that she would have done. So that makes me not mad at him. I never liked him, and certainly would never have him over for tea, but I feel like he did the right things medically.

We are going to NY on Friday. We are staying at a boutique hotel in my old neighborhood (which was full of crack and hookers when I lived there, sorry Mom). We are excited to see those babies and Jessica and also Bob and Jim. B&J are doing something seldom done - they are travelling to Brooklyn to see us. That is really nice. I want the weekend to be as mellow as possible. Because I am tired all the damn time.

Today I took what I thought would be a short nap, I went to bed at 1:30, Pat woke me up at 2:45 (15 minutes after I was supposed to leave to get Bennett), she went to pick up Bennett and lo and behold another hour passed while I snoozed. Bennett finally handed me some pants and told me it was time to get out of bed. Must be pretty bad if my 4 year old is getting my pants for me...

Pat and I went to Trader Joe's this morning, and did other mundane things like go to the bank and tattoo parlor. Huh!?! Yep, we made an appointment this morning to get tattoos because I think it will be easier for me to die if I have P & B's names on me, then Pat decided she wanted my name on her. I told her she shouldn't because of her next girlfriend and I think that made her even more determined. Anyway, the tattoo people never showed up, so Pat remains ink-free and I will have to try a new parlor.

Another cool thing that Pat did was get a facial at the Cancer Connection. She literally looks years younger. I will have reflexology later in the week. I had the facial once. I made my face feel very moist. And that can't be bad, right?

Where to Start?

Pat was nice as can be and let me sleep until 10. I didn't mean to fall back to sleep when we all woke up around 8, but I did. Out like a light. Then off to Ruth and Theo's for brunch with their good friend, Morgan. We had a feast - Theo is great at putting many many yummy things on the table that make the main dishes (buckwheat pancakes and eggs) taste even better. Pat and I sat on their couch for most of the day and just hung out. It was very pleasant. I will be doing that again soon.

Then we headed home without Bennett. And we quickly used the time to clean the house. Lucky because last night, when I woke up in the middle of the night, I asked myself who's house could this be? It was so messy. Now all the crap is put away, we had to get a bigger bin for all the Barbie stuff, and Pat even did a little mopping while I did the bills. Amazing what you can get done without the kid around. Then Pat made dinner for all of us. Delicious brisket, roast potatoes and steamed carrots. Yum. The brisket was so tender - her cooking skills get better every day.

Ruth is here now - bathing Bennett. I have been trying to keep still because of the pain in my abdomen, tomorrow we have a full day that starts with bringing B to school. I have mixed feelings about going to see Dr B on Tuesday. I am very grateful that I don't have to get chemo, but I also don't really like his glass half empty way of delivering news. Ruth is coming with me, so that will help. She is really good at remembering details and fun on the drive there and back. So, as Nancy would say there is only this moment, and no need to think about my appointment with Dr B. I will try my best to remember that. At least I know that he is not going to tell me again, for the first time, that I have cancer. That's been done, and never has to happen again.

Sit, Sit, Sit!

Tee day had a rough start for me, the house felt just covered with junk dragged here and there by Bennett. I tripped on a bin full of Barbie stuff, Stepped on a Barbie high heal, accidentally kick a little chair that had about 100 little pieces of Barbies paraphernalia - spraying them all over the house. I just had to go back to bed. And I found myself just bawling and like Bennett says "I just can't stop crying." Bennett sat with me and wiped my nose and eyes and petted me. I just didn't know what to do. I didn't like falling apart in front of Bennett. Or Pat for that matter.

Mary (and her family) is moving to Fiji in August. I found out last night and I this is the first time that it is starkly illustrated that life goes on. And that I will probably not know how this adventure turns out. It's very sad for me. But, I remind myself, that inevitably someone I know will get married or pregnant, or something extraordinary and I won't know how those things will end up like either. So, like another moment when I feel like the clown has jumped out of the closet and hit me on the head with a skillet, I will figure out what to day by day. That's all that can be done.

Bennett update. Last night she asked me (again) if I was going to be the first one to die in the family. I said yes and when she asked why, I told her I had a sickness that was going to make me die first. She said if people keep dying then there won't be anyone left on the planet. I told her that people die every day and that people are born every day (It was more involved than that, but you get the idea). She said Oh, that's what happens, people die and then they are born again in another body. So, Bennett invents reincarnation. I told her that some people believed that and it was called reincarnation. Then she looked at me and said "oh mom, that is just like the sun setting and the moon coming up."

Brilliant.

No Room at the Inn

So the decision has been made, and I didn't have to make it. There is no room for me on the Phase 3 trial at Dana Farber. They have four slots (it is a national study with many institutions getting a small number of slots), and I am second on the waiting list. They are applying for more slots, but the woman I spoke to said she was not hopeful. I should hear from them next week. So there we have it.

Mostly I feel fine about it. I called the herbal healer and left a message, so we will see what she has to offer. I had reflexology today and it reminded me that I need to seek out people who will soothe my body during this process, because I believe it is healing.

There is not much to say except here we are on another part of the journey with only a little idea how to proceed. I guess we will learn at every step.

Bennett is really struggling. She knows that I am going to die. She talks about it quite a bit. Today at school, during lunch, the teachers were telling the kids that someone's grandfather died and B burst into tears and said I don't want Momo to die. Then tonight she sang me a song that went like this "I don't Mommy to die, when you die you die forever." It was really heartbreaking. She also asked me today would I die while I was 46 or 47. I just try to maintain my calm demeanor and tell her the truth. You do die forever, I don't know what number I will be when I die, that I am going to die first. Etc. When I try to get her to talk about it, she doesn't want to. She only wants to talk about it when I am not prepared- or at least that's how it feels.

So to cheer ourselves up we are going to NYC in a couple of weeks. Hopefully the weather will hold. We are going to hang out with Jessica and her gorgeous babies and Bob and Jim. It should be fun. Bennett is already excited. Me too.

A Mixed Bag

I had a very hard time leaving my bed this morning. I woke up in some kind of funk that made me believe that I was only safe in bed and not out of bed. I finally asked God to help me out of bed and, I am telling you it was like a miracle, I suddenly wasn't afraid anymore and I just got out and started my day. Thank goodness starting my day was getting myself to Northampton and talking to Ruth on the way. My friend Ruth is very wise and really helped me remember that staying in bed like a turtle is not the end of the world. It's just something a person needs to do every once and awhile.

Then I got to see Nancy. She helped me realize that I not safer in my bed, I am giving up participating in my life. My precious life. She said I stayed in bed as long as I needed to and then got out. No judgement. That goes along with her belief that I am just as tired as I am, and there is no guilt about it. She is very good. She also put me onto a herbal healer in Amherst. I will call her tomorrow. I haven't heard back from the Phase Three trial people, and the longer they take to get back to me, the more I realize I don't really want to do it. I am just so tired of being sick sick sick. You know, from the chemo. I am also tired of having cancer, but that doesn't seem as tiresome as more chemo.

Anyway, I feel a lot better today. I still have some pain, but it's much less. I didn't take a Percocet yesterday, it was a Vicodin. I looked at the finer writing on the bottle this morning. It doesn't really matter because it worked and that's all I needed. I have an appointment with Dr B next week. I am going to drill him about pain management and who is going to keep an eye on me for this point forward. I am certainly not going back to my Primary Care Physician, and it might be a little late in the game to get a new doc. Unless it's time to move on to someone who specializes in palliative care. I might be getting ahead of myself. This is why I need to talk to Dr B.

Bennett asked me today if I was going to be the first one in the family to die. I said yes. She cried and said that she did not want me to die. I told her that I didn't want to die. Then she said that she wins because she is going to die last. I told her that was a great contest to win and I was glad she was the winner.

Modern Pharmaceuticals Are Good

I have a lot to post about today. First I would like to say that the trip home was great. I am not sure that I made that clear in my last post. Bennett was the first-class traveller that she is (in coach, of course), the food was good, the seats in the plane were the very last row (very wiggly and bumpy). We all made it home in time to eat the delicious pears, cheese and nuts that Ruth and Theo left for us. It was perfect. To bed for all of us before 7.

Yesterday I slept in late. I don't remember what time I was out of bed, but it was way too late. Probably something like 5pm England time. We had a nice mellow day, Ruth and Theo came over and Bennett's Christmas continued. I am worried she is going to thing that the tradition is to get presents over a 20 day period. And Liz and Julie are coming over tonight with more presents! Holy moly.

We took the tree down today. It was very dry. Bennett had a major cry over Spingey being put on the street. She thought it was cruel to put it outside, at least we should keep it in the basement.

And at that point the pain started. Something very bad in the right abdomen. I tried to just live with it, but when I actually started yelling out every once and awhile because I couldn't stop myself, I took myself to bed. Then I talked to Ruth, who asked me why I wasn't doing what Dr B would want me to do - take some pain meds. Excellent point. So I took a percocet and 20 minutes later was fine. I have used this pain as an excuse to curl up in bed with Bennett most of the day watching movies and snacking. I can still feel the pain, but I am not yelling anymore.

Today is my one-year anniversary of my surgery. I made it an entire year without going to the hospital - I guess that will be true in 5 days, because I was in the hospital for 5 days. And when I came home last year, we had a huge snow storm. This year, nothing except that crazy Halloween storm.

Anyway, one more thing. I got an itemized bill from UMASS Memorial for the chemo I had during the month of October. This was the first time they sent one - I am responsible for the copay which is $40. Anyway it cost $93,000 for one month of chemo. Before the drugs stopped working, I had about 30 treatments, 7 scans, surgery, etc, etc. I am totally blown away by this amount of money. It seems dirty and criminal in some way. One vial of Oxoliplatin is $16,000. Someone is making some big money on people who are really sick.

So really, I am so grateful the state of MA has insurance available to me. I will never again balk at paying my $91 a month premium. It's got to be the bargain of the century.

Home Again, Home Again, Jiggity-Jig

Flying is amazing. One minute you are in England and the next you're in your own home, so grateful for all the familiar things that make life easy and sweet. We had a great time in England. Mary and John were great hosts, and Alex gave up his room for us. And Anna gave up her room for Alex. Everyone was generous. And I am so glad we stayed an extra day - we went for a lovely walk, had one of Mary's famous dinners, with apple crumble and clotted cream for dessert.

It was hard to say goodbye. I mean it. This was the first time where I felt like I was saying goodbye and maybe for good. I don't get to see John and Alex that much and I felt a deep pang of sorrow. It reminded me of that guy I met in the one support group meeting I went to - his thought every goodbye was Goodbye with a capital G. I don't want to be like that, but I also have to be realistic. If that is realistic, who am I to know.

So we are home. What a wonderful gift that trip was. I decided not to pay attention to anything tonight. No phone, no mail, no to do lists. Just being. Watching Bennett play with her Barbies and try to figure out what Barbies wear to bed. She is still working on that one. We might have to go pajama shopping tomorrow. Sitting next to Pat while she reads her new book on how to cultivate wild mushrooms. All the while wrapped up in the cozy orange blanket that Joanne sent when she found out the drugs stopped working. It's my hug blanket. It's lovely.

Who knows what tomorrow will bring. What time will we even wake up? I'll keep you posted - as always.